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Sunday, November 23, 2014

Cancer bores me! Supporting pediatric cancer patients

A childhood cancer diagnosis rips the rug right out from under most families. It’s scary and painful for the patient, no matter the age. The cancer treatment process can be lonely…and really boring.

Three organizations hope to ease the difficulty of the pediatric cancer journey.

The Comprehensive Cancer Center at the University of California, Davis, along with Yoursphere, a children’s social networking company, have collaborated to create a safe, interactive web community that enables young cancer patients and survivors to connect with their peers.

“Kids’ Cancer Corner” provides children who have been diagnosed with cancer, and their support groups, a rich social networking experience that is content- and age-appropriate and complies with the Children’s Online Privacy and Protection Act (COPPA).

Besides an opportunity to seek support from other kids around the world, the website includes activities that can help take their minds off the disease, share stories and offer hope to others.

Kids also will get a chance to extend the friendships they’ve made with other kids while in the hospital or infusion (chemotherapy) center.

The UC Davis Comprehensive Cancer Center’s Adolescent and Young Adult (AYA) Cancer Advisory Board helped develop the Kids’ Cancer Corner, offering ideas for content, games and video clips.

“Children dealing with cancer often want to hear stories about and meet survivors who successfully completed treatment,” says Marlene M. von Friederichs-Fitzwater, director of the Outreach Research and Education Program at UC Davis. “Survivors also benefit from the satisfaction of giving back.”

PeppedUp! t-shirts sales raise money to help pediatric cancer patients. Courtesy PeppedUp!

Speaking of “giving back,” local cancer survivor Ron Haberle, of Chandler, recently started the non-profit organization, PeppedUp!, to help supply kids with hand-held, portable entertainment devices to use during treatments and hospital stays.

PeppedUp! has also supplied Kindles to family members who endure long hours of waiting during treatments and surgeries, along with gift cards to load reading material.

The idea, according to Haberle’s website, is that sometimes the best medicine can be a simple escape — through books, movies, and games — from the daily grind of the disease and the pain that goes along with it.

Haberle, who has always known he’d do something to help kids with cancer, has been working nights and weekends to build the organization, a 501(c)(3) tax-exempt non-profit. His hard work is beginning to pay off; a recent fundraiser earned more than $14,000 in donations. PeppedUp! accepts used iPads, Kindles, Playstations and other hand-held forms of entertainment. The organization also raises money through donations and the sale of purple T-shirts and wristbands that say, “Cancer bores me!”

Another way to support pediatric cancer patients this summer involves a scoop of non-fat, low sugar blueberry frozen yogurt. Or any flavor, for that matter.

The Purple Society, also a 501c3 charitable organization, was founded by Anthony and Suzann Conti of Scottsdale — also in their spare time, on nights and weekends — after their 12 year-old daughter Nitalia lost her life to a rare brain cancer.

On Thursday, August 2, 2012, TCBY of Scottsdale, located at 8120 N. Hayden, E 102, (NW corner of Hayden at Via de Ventura) Scottsdale, will help hold a fundraiser for the Purple Society. TCBY will donate 30% of its profits on that day, says the organization’s community development director, Keri Lee.

The Purple Society’s goal is to help provide resources and information to families fighting the disease. Families of childhood cancer patients can connect with worldwide resources, clinical trials and treatment facilities through werpurple.com.

Those who donate $25 or more can get a purple amethyst support bracelet as a gift.

More resources for kids living with cancer:

UC Davis Cancer Center Adolescent and Young Adult Advisory Council
Planet Cancer 
Teens Living with Cancer
Young Survival Coalition

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Vicki Louk Balint

Vicki Louk Balint, a multimedia journalist and mother of four, covers health issues for RAISING ARIZONA KIDS magazine.

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